It started with a response to a blog entry I received from one of my most cherished friends, in which he mistook my willingness to accept my circumstances as courage when they are, in fact, pure cowardice. It seems that I didn’t really like admitting that I was nothing more than a big ‘fraidy cat, because after three plus years of being committed to a reality in which there is no surgeon out there who could help me (if I were to somehow change my mind about being cut open again), I started researching the wonderful world of neurosurgery.
After a few days of digging, I happened across a web site dealing with syringomyelia, a condition I have, that also talked about spinal cord tethering. I started reading some stories about the miraculous results that people were having thanks to the doctors at the Chiari Institute, and it happened: I started to feel a flicker of hope.
But even more than hope, I started to feel less alone. In my now 30 plus years of living with an anaplastic astrocytoma, I’ve only ever met one other person who shared my diagnosis and lived for as long as I have. Just that diagnosis alone made me feel like an orphan in the world, feelings that only intensified as I survived more life-threatening experiences and was diagnosed with other rare diseases. No matter where I looked, I couldn’t find anyone who could come close to relating to the realities of my life…until I found this web site. To my astonishment, the first reply to my introductory post is a woman who has survived many of the tribulations I’ve had, and my hope that I had found people whom I could commiserate, who would truly understand how frustrating it is to live as an anomaly, soared.
Then I started really reading the site in its entirety, and all of those hopes were dashed. In my elation, I failed to grasp that the talk of de-tethering on this site referred to (in the most basic of terms) the releasing the lower end of the spinal cord to the bottom of the spinal column, which has no relation at all to the surgery needed to release my cord. When that was brought to my attention, the spark of hope that the Chiari Institute could offer me any relief, or even better odds for coming out of a detethering/duraplasty procedure better off than I went in was snuffed out.
And the more personal stories I read, the more I felt that while we all have at least one degenerative spinal cord disease, the people with the specific diseases covered on the web site were, for the most part, very different from me. Some are just much earlier in the course of their disease than I am…many have just been diagnosed. Most just don’t appear to have symptoms as severe as mine. This is not meant to dismiss the pain and suffering those good people must endure, it’s just a conclusion made on quantifiable evidence including number and dosage of medications needed to function part of the time. I just can’t see someone who only needs to take a small dose of a muscle relaxer to get relief from spasms to understand how it feels to have plasticity so severe that I have a pump implanted to deliver medication directly to my central nervous system, take the maximum daily dosage of another oral anti-spasmodic drug, and still don’t get more than 60 percent relief from the tension, twitching, and knots.
The emotional crash that occurs when what seems to be a long-sought and much needed oasis is discovered to be nothing more than a mirage has always hit me hard, but for some reason this particular experience knocked me down harder and is on track to keep me down for longer than other times I’ve been through this. I suspect it’s because I went into this search under a shadow of fear that this is exactly what would happen. It’s not in my nature to re-open decisions I’ve made, and it’s definitely not my typical M.O. to ignore nagging red flags, yet that’s exactly what occurred.
Despite the lingering effects of those crushing emotional blows, I was able to confirm with a sky-high degree of certainty that my only options are having a horribly risky surgery, and that there isn’t a neurosurgeon out there who has any experience with anatomy as fucked up as mine. Again, this statement is not meant to belittle the very serious problems faced by others. It’s just a matter of fact that there are astronomically poor odds of finding someone else has:
On good days, I look at all I’ve been through and am astonished at what a miracle it is that I am alive and can do so much. On bad days, I see all that and all I feel is lonely...
...until, seconds before posting this entry, that same dear friend mentioned earlier replies to the pouty, "oh poor me" email sent minutes before I put these thoughts to paper, and from over 2000 miles away makes me feel special and loved and embarrassed, and far from alone.
Everyone should be so lucky to have such a wonderful person in their life.